The concept of stigma gained currency in social science research first through

the work of Erving Goffman[1]. Much of this research has been framed by his
interests in questions of micro-social processes within which the self is created
and maintained. Goffman applied the term (negative) stigma to any condition,
attribute, trait, or behavior that symbolically marked off the bearer as culturally
unacceptable or inferior, with consequent feelings of shame, guilt and disgrace.
He distinguished between three types of stigma associated with abomination of
the body, blemish of individual character, and with membership of a despised
social group. The common element among these three types was the notion of a
spoilt identity and its management through stances such as concealment,
defiance or irony. In considering this concept and its relevance for issues in
public health, I shall ask whether we need to place this concept within a family of
concepts e.g. that of contagion, defect, and disability, in order to give it a
greater cross-cultural relevance. Stigma manifests itself most clearly in what is at
stake in face-to-face relations yet the programs and policies of larger social
actors such as the state and global institutions are implicated in both, the
production and amelioration of this condition. Let me start with the way that
notions of stigma come to be linked with other related concepts such as that of
contagion and defect within what Arthur Kleinman calls local moral worlds, and in
the policies and programs of larger social actors[2].

Stigmatized subjects and the connections between body-selves

Although Goffman was sensitive to the differences between the three types of
stigma that he identified, the unifying concept of a spoilt identity and its
management, loaded his analysis towards a highly individualistic rendering of
the subject the individual appears in his analysis as the sole bearer of value.
Since agency is conceived in the form of resistance to collective representations,
the concept of culture comes to rest on the notion of shared values and
representations with rather less attention to the nuances through which culture
is in fact embodied or actualized in individual lives. This leads to a neglect of
forms of collective action on the one hand, and of contests over values within the
rubric of everyday life, on the other. Elsewhere I have argued that whereas the
language of normality assumes a sharp hiatus between norm and its
transgression, we can find a hyphenated relation between these in the blurred
contours of everyday life[3]. I suggested further that the notion of domestic
citizenship may be useful to capture this nuanced relation of norm and
transgression and to see how families may mediate between the collective level
of social response to conditions of stigmatized disability and the individual life
trajectories[4]. Recent ethnography offers interesting examples of how the
immediate community within which the domestic is embedded (be it kinship or
neighborhood) becomes the world within which family often has to confront the
opprobrium of stigma, making it difficult to postulate a seamless continuity
between family and kinship or community in the case of stigmatizing illness.
This, in turn, yields startling revelations about stigma associated with disease,
disability and impairment as located not in (or only in) individual bodies but

rather as off the body of the individual within a network of family and kin
relationships. It is useful in this context to consider the different types of stigma
in relation to the configuration of domesticity - rather than individual agency as
the focus of attention we could see how the individual comes to be embedded
within the domestic or excluded from it and its implications for policies on public
health.

Stigma, Aesthetics, and the Importance of Face

An examination of the genealogy of the ideas of defect shows how defective and
stigmatized subjects were historically produced on the intersections of various
kinds of norms especially those of femininity and normalcy. For instance,
Campbell[5] has argued that that contingent discursive inscriptions of defect
could imperil the life projects of female subjects even in the absence of any
functional disability or impairment of the senses simply because of the way that
diseases were seen to mark the individual female subject. She gives the
example of eighteenth century European women whose small pox scarred faces
were rendered as damaged and who were then assimilated to other
stigmatized and damaged subjects[6]. A recent study by Weiss of new born
infants in Israel who were abandoned by parents because they were
appearance-impaired though they did not suffer from any functional
disabilities, points to the conditional character of parental acceptance of
stigmatized subjects[7]. Her analysis shows that parents felt that their social
lives would be thrown into peril for which they blamed their impaired infants
even when persuaded by social workers to bring such infants home for short
periods of time, they ended up hiding them in dark corners of the house because
they wanted to protect their other children from contact with an impaired
sibling. What is remarkable in Weisss account is not that parents expressed
despair or even hostility, but that all other emotions such as hope, sorrow, or
regret were censored out of their narratives. Thus the tyranny of norms of
appearance that stigmatized facial defects seems to have thrown these infants
out of domestic citizenship into the domain of the state as the only sphere in
which their rights, including rights to life, could be defended.
In an earlier study Arthur Kleinman discussed the narratives of six patients
suffering from various kinds of stigmatized diseases or disfigurement, five of
these patients were treated in his psychiatric clinic in Cambridge[8]. The stories
of these patients range from the severe constraints on life experienced by a man
with a facial disfigurement despite support from his family, to life lived in
complete isolation by a man who suffered brain injury that led to a critical
diminishing of his cognitive capabilities followed by a divorce and separation
from his family. Kleinmans main concern was to show the intersubjective nature
of experience in chronic illness - it is remarkable that even in the clinical setting
of individualized therapy, he is able to show the ghosts of family dramas in the
individual narratives of his patients. But because of the context in which therapy
was offered we do not get a sense of the politics of family and community within

which such dramas took place. What, for instance, would account for the
complete severing of the relationships in the latter case? The power of his
description shows that for the patient, the suffering of the disease was
indistinguishable from the suffering of social isolation and stigma. If we had
access to the other members of the family we may have also learnt how they
lived with the memory of this ruptured relationship.
The stories of such betrayals of persons with stigmatized conditions need to read
along with other stories in which parents and caregivers negotiate norms, form
associational communities to learn and provide support and act in the public
domain to influence state policy and science[9] In these cases the family appears
to form a protective envelope around the child and caregivers repeatedly contest
the collective representations that would assimilate such children to stigmatized
subjects. It is especially interesting to see the new developments around what
Paul Rabinow calls bio-sociality, i.e. the forming of associational communities
around biological conditions to influence state policy and science[10]. Yet the
capacity of a group to use social capital for dealing with adverse biological
conditions is strongly dependent on other social conditions such as education a
public good, but not equally available to those who occupy a lower position in the
socio-economic hierarchy. So what are the other ways in which family and
community might become supportive rather than hostile to its vulnerable
members?
In some of my own work on this subject, I have argued that while the attention to
associational communities calls upon the individual as the subject of a liberal
political regime, there is another sphere of sociality relating to the politics of
domesticity, which operates outside this domain[11]. In the domains of family
and kinship stigmatized conditions are seen as a matter of connected bodyselves hence they give rise to a different kind of politics from the politics of
associational communities. Rather than a confrontation between state and
community, here we find the family pitted against the kinship group which tries
to put pressure on it so as to contain the stigma to the individual body rather
than allowing it to spread to the whole kinship group. Various strategies are
then put into place through rumor and gossip for separating the stigmatized
individual, confining him or her to a limited sociality, or giving only limited
recognition when included in the collective life of the group. While in such cases
families may not have the biocapital to engage with state and science in the
way described by Ginsburg, Rapp and Rabinow, they do need to use other
resources of the state to confront and defeat the social pressures generated by
local communities. I have elsewhere given the example of a Hindu Punjabi family
who risked their social capital in order to find a sexual and reproductive future for
their daughter stigmatized by a facial disfigurement by aligning themselves to
the state and claiming the rights promised in such legislative actions as the Civil
Marriage Act [12]. I am therefore wary of assuming a sharp separation between
face to face communities as repositories of the moral and the state as a source
of rational policy, for it seems to me that it is not in individual institutions (e.g.
family and community or the state and bureaucracy) but in their alignment that
resources to address problems of social exclusion resulting from stigmatized

conditions may be found. As we saw earlier, we cannot treat the domain of

family as that of unconditional parental acceptance but nor can we treat the
state as uncontaminated by social norms regarding stigma. Rather it is in the
way that new patterns of sociality around biological conditions emerge through
an alignment of domesticity with the state that we can find salutary examples of
the way in which the social exclusion resulting from stigmatized conditions has
been contested.

Body, danger and shame

While illness narratives of persons with disability generally deal with the feelings
of damage and low self-esteem as a result of the loss of the autonomy of the
body, there is a far greater weight placed on the feelings of guilt and shame in
the case of stigmatized conditions. Consequently a big question that looms in the
narratives of stigmatized illnesses is the question of innocence. Writing on his
experience of disability, Robert Murphy wrote, Disability is not simply a physical
affair for us; it is our ontology a condition of our being[13]. Borrowing the
metaphor of the primal scene from Freud, he argued that any confrontation of
people in which there is some great flaw leads to feelings of guilt and shame.
This, for him, was related not only to the social opprobrium of the others, but
also to the subjective feelings that the body impairment is a punishment for
repressed, elusive and forbidden desires. Thus stigma became for him, not a
byproduct of disability, but its very substance. On the level of social relationships
the disabled person presents a counterpoint to normality Murphys bitter
lament was that the very humanity of the disabled person is made questionable.
It seems to me that Murphys acute analysis captures the important point that
the changed body image in stigmatized conditions seems to trigger broader fears
of violation of sexual norms and hence dangers to a moral universe. Some
support for this can be found in Hanne Bruins analysis of the discursive
formations around the condition of leprosy in Tamilnadu in India where she found
that the major part of the stigma of leprosy arises because of a fear that the
stricken person has violated sexual norms such as that of incest or the sexual
and reproductive norms of caste hierarchy[14]. It is important to note though
that stigma seems to be associated not with the disease as such but with the
bodily deformities that come after the patch stage if the disease remains
untreated. The person afflicted with leprosy, however, has to start reading the
disease right from the onset of first symptoms -noticing changes in the body and
devising strategies of concealment. Patients have described their fears that if
their disease were to become known they would be cast out of the moral
community because of the presumption that the deformity of the body was a
punishment for infringement of sexual taboos. The entire discourse of anxiety
that surrounds the stigma of deformed bodies thus is about reduction of sociality,
exclusion from moral community as well as subjective feelings of guilt and
shame. Being cast out of the social community coupled with a diminished sense

of worth reduces the capability of the afflicted person to seek help even when
this is in objective terms, easily available.
It is in this context that we can see the great anxiety reported in the case of
stigmatized diseases with questions of innocence. In a study of leprosy
patients in Delhi and in Kanpur Dehat in Uttar Pradesh, Surabhi Tandon reports
that patients worry enormously about what kind of moral taboo they could have
violated[15]. She found that the predominant claim on the part of patients was
that their illness was not a result of any moral fault and that if the illness was
indeed a punishment, then it could only have been because they had
inadvertently broken a social norm. However, Tandon also shows that intricate
patterns of domestic and village politics entered the decisions of patients on
whether they could continue to live within the same moral community or
whether it was necessary for them to move out and to form new communities.
However, it was the visible changes of the body and the stereotypes about
patients having no fingers and toes, open wounds, fallen nose bridges, etc. that
were read as evidence of the moral transgressions rather than the disease
itself. With greater awareness about the role of multidrug therapy in curing
leprosy and reconstructive surgery, even in areas with endemic leprosy such as
Kanpur Dehat, the aspect of stigma became much less pronounced in the
discussions with patients and their caregivers[16]. This should warn us against
tendencies to reify culture, to assume that there are a set of unchanging
values that inform local worlds - for medical technology can make a decisive
difference in how a disease is culturally perceived. In the case of Kanpur Dehat a
large number of patients were recruited for a clinical trial of an immunotherapeutic and prophylactic vaccine and interestingly this helped to bring the
disease into the open. Villagers reported that the easy mannerism of the doctors
and social workers in the field when they touched or interacted with known
leprosy patients did more to allay fears about the disease than any verbal
messages. This is an interesting case demonstrating that it is the style of care as
much as its content that makes people read the disease in a different way.

The fear of contagion

The notion of stigma and contagion are theoretically distinct concepts the first
refers to the experience of being marked on the body by a condition that sets
one apart and the second to the potential for a condition to be transmitted from
one person to another but in the everyday life of communities these two
concepts tend to slide in each other. Even in the case of a disability such as
quadriplegia resulting from a neurological disorder, Murphy noted that social
encounters were fraught with danger because people acted like it is catching.
Murphy experienced it as a contamination of identity. As I have stated earlier,
though, the stigma of disability, impairment and body disfigurement is not
treated as an individual affair in societies that place less importance on the
individual as a locus of value instead it is treated as a matter of connected
body-selves. This does not mean that we can neatly divide societies into

individual-centered societies and socio-centric societies as some have

suggested. Rather it is a matter of seeing how stigmatized diseases lead to the
drawing of boundaries within the domestic and its immediate environment of
kinship and village or neighborhood community. The case of tuberculosis
presents an important example of the way that notions of stigma and contagion
slide into each other in the villages and urban neighborhoods in low-income
countries. This, I argue, has implications for the way that the biological course of
the illness comes to be related to its social course.
Susan Sontags analysis of illness as metaphor shows us the romantic
notions regarding the character of TB patients in nineteenth century Europe and
the ambivalence with which such patients were viewed[17]. While elite
discourses on tuberculosis in the South Asian subcontinent might have been
influenced by such notions of the relation between tuberculosis, melancholia and
artistic creativity (especially in literature and film), in the everyday life of
communities the stigma of tuberculosis exposes the patient to dire risks from the
way that the biomedical system(s) and the institutions of the state treat those
who have suffered from the disease.
In a critical analysis of the biomedical discourse on tuberculosis, Paul
Farmer has shown that there is predominant tendency to attribute failure of
compliance to the beliefs of the patients and the stigma attaching to the
disease.[18] Farmer presents a survey of the literature to show that the agency
of the patient is highly exaggerated in this discourse patients often fail to
comply because there are inadequate supplies of medicines in treatment
centers, or because of severe constraints on their time and money. Yet the
biomedical discourse creates a geography of blame in which their failure to
comply is attributed to their beliefs about tuberculosis. Do the institutions of the
state and science themselves contribute to this stigmatization of the disease?
In an ongoing study of health practices of families in low-income neighborhoods
in Delhi, we found that while tuberculosis undoubtedly created new boundaries
within kinship and community, there were other major deprivations patients
faced from the institutions of the state[19]. This was because of the way that
notions of stigma and contagion were collapsed into each other in local
administrative and social practices. Thus, for instance, some children who had to
drop out of government schools because of tuberculosis in one year were refused
admission in the next year even after they were cured, on the grounds that they
could spread the disease. At least in part because of the way that people who
had suffered from tuberculosis were treated in the community and in the DOT
centers, they themselves experienced recurrent fears that the disease would
never be fully cured and tended to attribute any subsequent symptoms of
weakness, sadness, fevers, unspecified pains to the fact that they once had
tuberculosis[20]. In an overall environment of poor regulation of pharmacies,
some of our respondents reported taking TB medication whenever they had
cough or fever as a prophylactic because they were scared that the disease may
recur and that they may be blamed for this. The collapsing of the categories of
stigma and contagion points to the fact that the social course of the disease may

extend beyond its biological course so that each notion reinforces the other.
Stigma is seen as contagious and conversely a disease that is contagious may be
seen as marking a person with stigma. It also raises the question of how science
and state might contribute to the perception of a disease as stigmatizing and
how that is related to existing fault lines of race, ethnicity and gender
discrimination.

Stigma, silence, and the geography of blame

A major concern in relation to stigmatized disease is that the social marks of
inferiority or blemish may lead patients and their caretakers to conceal their
disease. This has serious consequences for both the health of the individual and
the containment of infectious diseases for the population. It was mentioned
earlier that bearers of stigmatized diseases are seen as a great danger to the
community because of the assumptions that they have somehow violated the
moral taboos, especially those on sexuality. This leads to feelings of guilt and
shame. Obviously then diseases that directly relate to sexually tabooed behavior
bring questions of guilt and shame much more to the surface. However it is not
only individuals who are targeted as the bearers of stigma and blame in the case
of sexually transmitted diseases but there is also a political geography of blame
that comes to arrange the world in terms of guilt and innocence. The case of
sexually transmitted diseases such as syphilis and AIDS provides telling
examples of the way in which stigma of various kinds comes to be configured
together in informing the public discourse on stigmatized diseases.
The first decade of the twentieth century was a period of intense concern
with sexually transmitted diseases and the appearance of the social hygiene
movement in North America. It is interesting to observe that not only in popular
discourse but also in the biomedical system, a distinction was made between
venereal insontium, i.e., the venereal disease of the innocent versus the
venereal disease of those who were held guilty because of sexual misconduct.
Allen Brandt argues that this distinction had the effect of dividing victims into
those who were deserving of medical support and sympathy and others who
were not, because they were guilty of sexually promiscuous behavior[21]. It is
not surprising to see that the latter category slides into stereotypes fuelling a
fear of new immigrants, urban populations and blacks. Brandt shows that the
assumption of guilt led to the most pernicious violation of the civil rights of
groups identified as guilty sources of this disease. It is uncanny to see that the
end of the century saw very similar processes in relation to the discursive
formations that developed around AIDS.
In the initial years of the North American epidemic AIDS was widely
termed as the gay plague the discourse on the disease was hooked into the
cultural concerns with sexual morality and especially with homophobia. Because
of the rich cultural response by the gay community, at least in important urban
centers in North America, the taboo on silence was broken. Yet the very power of

this cultural critique of homophobia may have served to draw attention away
from other forms of discrimination that the anxiety on AIDS brought to the fore.
Susan Sontag claimed in 1988 that in North America AIDS evoked less pointed
racist reactions than in Europe or Soviet Union where the African origin of the
disease was much more stressed[22]. In his influential work on Aids and
accusation Paul Farmer pointed out that as early as 1981, members of the
Haitian community denounced the racism inherent in the stigmatization of
Haitians qua Haitians as AIDS-carriers[23]. Through a careful analysis of the
popular media and scientific representations in this period, Farmer shows how
the discourse on AIDS was tied to questions of immigration with a strong denial
of the evidence that many of the Haitians who were reported to have brought in
HIV infection into the country were likely to have contracted it after their arrival
here. Just as in the case of syphilis earlier, there was stigmatization of high risk,
marginal groups so that in many public pronouncements there were powerful
assumptions about culpability and guilt of these populations.
Questions of guilt and innocence seem to haunt other instances in which the
question of HIV infection has been addressed. In a little appreciated corner of the
epidemic there has been a controversy regarding those patients with hemophilia
who were infected with contaminated blood. As early as 1983, an article in New
York Times Magazine referred to the disease as if it were more poignant when
it attacked nonhomosexuals then when it attacked homosexuals. In recent
hearings on patients infected by contaminated blood products, the collective
narrative tried to carve out a space of innocence from which patients could
separate their own affliction from those whose AIDS was blamed in the popular
culture on personal behavior such as unsafe sex, or IV drug use[24]. The very
process of fighting stigma in such cases reaffirms the way in which personal
affliction is made to fold into the stigma of belonging to marginal groups.
There are other contexts in which ideas of innocence and their counterpoint
notions of blame- have been used to open up other kinds of suspect moral
spaces. Thus for instance, just as there is a discourse of the geographical origin
of AIDS in North America and Europe that is hooked into discursive formations on
race and racism, so there is a discourse in non-Western countries that reverses
this geography of blame. For instance in the popular representations of AIDS in
India and several other non-Western countries, the epidemic was attributed to
the moral degeneration and the lax sexual morality of the West. This allowed
even Government representatives and scientists to claim in the early nineties
that AIDS would never be a problem in India because Indians were protected by a
rigid and puritan sexual morality. Even when the problem was grudgingly
acknowledged in the late nineties, popular conceptions of AIDS continued to link
it with either marginal groups such as sex workers or with westernized women
from the feminist movement despite mounting evidence of the high rate of
infections among monogamously married women whose plight till recently was
completely ignored.

Scholars concerned with public health discourse and critical epidemiology have
repeatedly pointed out that notions such as patients beliefs have often led
policy makers and biomedical practitioners to blame the patient for failure to
comply with medical regimes. I hope this analysis shows the intricate
connections between the public and the private domains in addressing problems
of stigma. While the importance of stigma and the consequent social exclusions
in local moral worlds is very important to document, it is equally important to
realize that threats of new diseases create anxieties that can be expressed
through a political geography of blame not only in the popular discourse but also
in the scientific discourse.

The role of the state

Fears of contagion and stigma have often led to denial of basic rights. We can
document this by the well-known cases of sexually transmitted diseases. An
important example of how prejudices produced by stigma can function in state
sponsored terror is provided by the example of leprosy patients who were sought
to be compulsorily segregated despite scientific recommendations to the
contrary during the colonial period in India. This case is useful to demonstrate
the relation between contagion and state formation though it also points out that
colonial states did not exercise draconian powers simply as a matter of course.
Take the debate on incarceration of leprosy patients in India in 1890 when a
Commission was appointed to investigate the disease of leprosy in India. The
members of the Commission included eminent medial scientists nominated by
the Royal Society for Surgeons and the Royal Society for Physicians. The
Commission, after completing its investigations concluded that leprosy was a
disease sui generis and that it was not a form of syphilis or tuberculosis despite
ateological analogies with the latter. It said that the extent to which leprosy
was contagious was exceedingly small and hence no imperial law need be
passed to implement compulsory segregation. It stated No legislation is called
for on the lines of either segregation or interdiction of marriage with lepers. The
Commission did recommend that lepers should be prohibited from practice of
professions that involved handling of food or drink or from providing services as
barbers or washer men but they thought that segregation should be on a
voluntary basis. Accordingly they recommended that municipal bye laws would
be enough to handle the necessary state provisions that were needed in this
case undue force in the form of compulsory segregation, they thought, would
be unjust and would cause untold misery.
The Executive Committee of the National Leprosy Fund rejected the
recommendations of the Commission in 1892. The Executive Committee found
that the scientific evidence regarding most cases of leprosy having occurred de
novo was not conclusive. Hence it emphasized the importance of maintaining
colonies for compulsory segregation of lepers and also required that if leprous
patient be retained at their homes at the express wishes of their friends then
separate lodgments would have to be provided. It further stated, For carrying

out the above, in addition to funds, legislative authority is needed to take up the
vagrant sick, to remove the sorely diseased who is insufficiently guarded at
home, and at times to enforce continued isolation of the infected until medical
sanction of liberty be granted.
This case shows that it was not scientific evidence available in that period but
notions of stigma that informed colonial policy, though these concerns were
hidden under the overall concern with public health and public order. The state
turned out to be a major actor in the production of stigmatized subjects- far from
a rational state correcting the credulous public - its own policies were likely to
have contributed to the legitimization of the stigma surrounding leprosy and to
criminalize the patients through draconian laws.
The role of the state in establishing a connection between stigmatized disease
and criminality is further attested in the case of mental illness. The emergence of
new technologies of power in eighteenth century Europe through which the state
tried to control its unruly population has been the great theme of Michelle
Foucaults rendering of disciplinary power. Foucaults inattention to the colonies
leaves considerable scope to add greater complexity to the issue of disciplinary
power. Earliest asylums for the insane were established in India between in 1787
and then 1795 to incarcerate European soldiers showing signs of insanity. In the
period between 1856 and the end of the nineteenth century, asylums were
established for Indians. As in the colonies of Africa, where these came to be
established in the beginning of the twentieth century, asylums functioned as
adjuncts to the penal systems.
In a recent analysis based upon archival records James Mills[25] has shown that
though the number of those incarcerated in the asylums in India was not large in
itself, the discursive formations around madness were part and parcel of the
wider politics of the colonization of bodies in which the capacity to perform
approved labor was established as an important sign of normality. Thus insanity
and criminality had a great deal to do with refusal to perform forms of labor that
were approved by the state. While it is clear that labor did not structure asylum
regimes in India in the same way as the prison, yet irregular, peripatetic, and
unproductive occupations were likely to come under one or the other form of
disciplining by the state. Thus prisoners who refused to perform productive labor
were frequently transferred to asylums where their perceived aversion to labor
was counted in support of the diagnosis of insanity. Mills observes that readiness
to resume labor was seen as evidence of recovery and that the discourse of
madness easily slides into the perceived faults of the Indians as a group and the
asylum regime, like colonialism itself, as a project for reforming the Indians.
In this context it is important to consider not only the institutions but also the
systems of knowledge through which such slippage between individual affliction
and group stigma was sustained. Jock McCulloch has analyzed the colonial
archives on asylums in Africa and the literature on ethno psychiatry to show how
discussion on causes of insanity among African patients inevitably led to the
stigmatization of the whole culture[26]. He quotes extensively from respectable

journals in this period to show how in evaluating African patients there was a
strong tendency to stigmatize African culture that was held responsible for
creating a climate of fear because of widespread belief in witchcraft. Africans
were further accused of having lack of individuality, of rigid adherence to rules
and absence of responsibility, which led them to be sexually promiscuous and
socially unreliable. Ethno psychiatry played a role in stigmatizing independence
movements in Africa. Thus the scientific discourse on stigmatizing illnesses
followed the fault lines of race and ethnicity. It is quite likely that the state thus
played an important role in legitimizing social exclusion of the insane though as
McCulloch himself notes, hospitals and asylums were likely to be used only for
those who already fell into the category of social refuse.
Unfortunately it would be far too easy to assume that postcolonial
societies have been able to overcome this pernicious equation between stigma,
crime and guilt. It was as late as 1987 that the Indian Lunacy Act, which had little
concern with the welfare of the mentally ill, was changed to the Mental Health
Act in India after considerable pressure from the mental health community. The
National Commission of Human rights in India, since 1996, has been pressing the
various state governments to take steps for the amelioration of the condition of
mentally ill patients who are languishing in prisons. The conditions in private
institutions for the confinement of the mentally ill in small towns continues to be
dismal though there is some reported improvement in the government run
institutions after strictures from the Supreme Court in early nineties. As recently
as last month (i.e. August 2001), 25 mentally ill patients were burnt to death in a
fire in an asylum in a small town in Tamilnadu where enquiries confirmed that
there were fifteen private asylums in the city and that it was normal practice in
these to keep the inmates tied. Even in a country as affluent as the United
States, the Justice Department has stated that one-fifth of the estimated 191,000
inmates of prisons who were identified as mentally ill were not receiving any
treatment.

State and Science

As we saw in the case of AIDS activism, the homophobia in popular discourse as
well as in the institutional practices of state and science was challenged in the
responses by AIDS activists. Their challenge also brought out the way in which
notions of stigma inform policy and programs of the state. It is salutary to realize
that the community discourse on stigma is not isolated from the discourses of
the state. In the previously colonized countries such as India, the discourse on
stigma bore the marks of colonial legislation. Thus the Vagrant Lepers Act, the
Lunacy Act, the Contagious Diseases Act, the Cantonment Act, were all designed
to protect public spaces from the presence of stigmatized bodies. The Vagrant
Lepers Act still forbids begging by lepers the language used is not neutral
and points to the way in which patients suffering from Hansens disease were
often abandoned and had to fend for themselves by begging and were
criminalized for this. In general, the legislation has lagged behind scientific

breakthroughs. For instance though the prevalence rate of leprosy in India

declined from 50.2 per 10000 in 1994 to 6.2 per ten thousand in 1996, yet
changes in legislation on various debilitating conditions for such patients has
been very slow. This is true for many other countries. In the case of Japan, the
Kumamoto District Court recently ordered the government to pay 1.82 billion yen
in compensation to 127 Hansen's disease patients for violating their personal
rights by segregating them under the 1953 Leprosy Prevention Law. The court
said the former Health and Welfare Ministry was negligent for failing to alter its
isolation policy. This could have been done by 1960, when it had been confirmed
that the disease was curable The legislature was also held responsible for failing
to amend relevant laws, including scrapping the Leprosy Prevention Law. The
government policy of isolating Hansen's disease patients in sanatoriums ended
in 1996 when the Leprosy Prevention Law, which the Kumamoto court deemed
unconstitutional, was abolished. (As reported in Mainichi Shimbun, 2001)[27].
The above instances are important for devising strategies to deal with
the stigma While such stigmatized groups as patients with Hansens disease,
prostitutes and other high risk marginal groups, ethnic minorities, new
immigrants may not have the biocapital to fashion a cultural response to stigma
in the manner of gay activists, the removal of pernicious laws and administrative
practices would be an important step in low income countries to deal with such
issues.

Concluding summary
In conclusion I would like to draw attention to the following salient points with
regard to notions of stigma, and its relevance for public health interventions.

While much of the literature in the West emphasizes the stigma as

production of spoilt identity and its management, in other parts of the world
stigma along with its related concepts of contagion and defect are seen as
problems of connected body-selves.

The moral anxiety around stigma arises from its connection with taboo
deformed body selves are especially seen as marks of violation of sexual and
reproductive taboos.

Discourses on stigma are deeply implicated in the fault lines of racism,

sexism and other forms of discrimination, but it is important to treat culture not
as a set of shared, unchanging beliefs but as framed by contests and
adjustments. The notion of domestic citizenship provides an entry into thinking
of the ways in which culture is mediated and recrafted by contested
engagements in the sphere of domesticity.

A major way of contesting stigma in recent years has been through

formation of associational communities not all forms of stigma though may be
addressed in this manner since this depends crucially upon social capital and
bio-capital.


In many previously colonized countries state legislations have lagged
behind scientific knowledge in changing forms of legislation that was enacted in
colonial contexts and was designed to protect colonial interests rather than the
interests of the patients. Since the institutions of the state are equally implicated
in production of stigmatized subjects, judicial activism towards reform of
pernicious laws especially with regard to sexually transmitted diseases and
mental illness would be an important resource for marginalized groups to deal
with stigmatized conditions